In Their Own Words – The Silver Lining

Did you ever do something completely outrageous, if only just to satisfy your special needs child? It’s like a moment when you surrender to autism, and you can’t decide if that is good thing, a bad thing, or just a fact-of-life-on the spectrum autism thing.

That was me this past weekend.

I was trying to put a positive finish on an up-and-down weekend. I had cringed as Trevor struggled to follow instructions at the hockey clinic he attends. I beamed when he came off the ice smiling, proudly telling me how sweaty he was from the hard work. I took it like a kick in the gut when I asked Trevor what his friend from special needs camp might like to do on a play date and the answer began with “Well, I like garages and he likes traffic lights …”

Trevor does like garages. He classifies all houses by their garage doors, and he describes the doors by naming their color/window scheme, starting from the bottom up. There’s “brown-brown-brown-brown” and “white-white-white-glass” and “white-white-glass-white” (because the windows aren’t always in the top row. Who knew?)

There’s even “ficky glass” – his word for windows that aren’t square but rather are some fancy shape. Oh, and “T glass,” or windows with four panes instead of one.

A week ago, when we were talking about garage doors (in an attempt to distract Trevor from his anxiety over the brutal traffic coming back from the Jersey shore), I happened to mention that ours was actually “white-white-GLASS-white,” which has much more status in the garage world. The windows had been painted over by some previous owner.

Ever since that moment he’d been asking me if we could scrape the paint and transform our garage. It was not a project I was enthusiastic about, for a number of reasons. Nevertheless, on Sunday I finally ran out of excuses.

The clincher came when Trevor agreed to go with me to the store to get the supplies. He NEVER agrees to go to the store, even if it’s to get him something.

I relented. I was ON BOARD. So what if it was 90 degrees and 1000% humidity and I would be scraping paint inside the unventilated garage with the door closed? (Did I mention the windows were painted on BOTH SIDES?) Darn it if I wasn’t going to win Dad of the Year, or die (likely from paint-chip inhalation) trying.

A few minutes into the job I realized how futile it was. The paint was stubbornly clinging to the windows. I had to keep shooing Trevor away from helping for fear he’d inhale some of what I was trying to block with my 99 cent painter’s mask.

Finally, I got a single pane cleared – on the outside. Dripping in sweat and covered in paint flakes, I decided that I would do the inside of that one window and stop. Then I’d let Trevor come up with a new name for the resulting garage scheme.

I moved inside the garage to do the other side. I shut the garage door and started scraping away. I got it about half done when I pushed a little too hard and the glass shattered. My heart sunk. My anger spiked.

I was angry to be soaked in sweat, inhaling God knows what, scraping stupid paint off a stupid garage door window because if my son was “normal” I wouldn’t be there. I was angrier still that I wouldn’t be able to deliver for him. I threw down my scraper and threw open the garage door – conveniently forgetting that in doing so I was raising the glass shards directly over my head. The glass came crashing down on me. I felt my scalp. My hand was covered in sweat, and more than a little blood. Luckily it was just a nick.

I went inside. For about the tenth time since I had started, Trevor asked if I was all done, and his look just broke my heart. It was as if an affirmative answer would have made everything all right, if only for a moment. I think as special needs parents, we are always trying to deliver those moments. Every once in a while we can reorder the world to suit our kids.

I told Trevor the bad news. I feared a meltdown. He took it well, but was disappointed. I went back outside to tape some cardboard over the shattered window, and then finally allowed him to see my work.

He looked it over and pronounced the result “okay”. We now have a “white-white-SHADY GLASS-white” garage. In the words of the Jeffersons, we’re “movin’ on up.”

I told this story to several co-workers Monday. They got it but they don’t GET it. And that’s okay, too. Maybe the next time they see a child with an “odd” interest or one melting down in public, they’ll think twice about their reaction. Maybe they’ll start noticing exactly how many different types of garage doors there are, too.

The silver linings are out there, they’re just sometimes, really, really, REALLY hard to see.

This “In Their Own Words” essay is written by Russ Levine, a father of two children, one who has autism.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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In my book that story ranks you right up there on the list of Great Dad’s!
It doesn’t have to make sense, it doesn’t have to make a difference to anyone but to your son…the fact that you would go through all that because it matters to him is awesome. Happy Father’s Day!!

Russ,
I don’t have a child with autism but work with them. Just so you know, someone out there does “get it”. I applaud your efforts in appeasing your son as that was important to him. I agree and appreciate your comments that people should think twice about their reactions. No one is perfect and all children are different!

Way to go, Russ! I hope you had a Happy Father’s Day! Your efforts are applauded and appreciated on many levels, I am sure. We all have done things along these lines to please our special needs child, and I have to believe that it makes an impact on our loved one, regardless of the immediate responses. Keep it up! You are a great dad!

Hi Russ,your story shows that you are a great father. As I reading i was smiling because similar stuff has happened to me with my son David.and you have to be a parent of a special kid to really “GET IT”.

Hi Ileana – I’m a grandmother who “gets it”. My 5 year old grandson has autism and loves to sing and dance. I find myself jumping up and dancing and singing with the “Wiggles”, which brings a big smile and giggle from my grandson, and then he jumps up and joins in (I’m normally pretty reserved – never acted too “silly”, but he brings out the best in me!) I did sing to my children, and now to my grandchildren – and it is so wonderful to hear this child who is not very verbal, to sing along, or sing to me on his own. My husband and I have both learned to appreciate all our little one’s accomplishments (which could be small in some people’s eyes), but are hugh for him).

The story that I have is that now my son is a neat freak. He does not like getting dirty. Every time that we have to go for a haircut, we immediately go home and take a shower. He does not like to have “dirty hairs” on his clothes.

When there’s a picnic and everyone sits on the blanket, he refuses to sit on the blanket even though, he wouldn’t be dirty from the ground but in his mind there’s dirt underneath.

I GET it! Russ -you are a wonderful father and really outdid yourself to show such love to your son! I just want to say… Get this man some garage glass!!! The silver lining is your son knows how hard you worked – he does- even if he can’t express it and that kind of love is something that transcends words. Good for you!

Well that was one great story,,, and well written too. Thanks for taking the time. And from the proud father of a boy who knows every licence plate in Morris county…. and has to stop to look at every new one …. on both sides of the car!!….I definitely get it. Keep that sense of humor Mr Levine! Scott

You are a terrific DAD. I have seen that heart-breaking look on my son’s face too. I always try to respect him by respecting what is important to him. If someone doesn’t “get it,” I explain it. If people try to say it isn’t important, I tell them it is important to our family. Thanks for taking the time to tell your story.

I have so many stories, I wouldn’t know where to begin. One year our son was afraid of the sun so we had to keep the curtains closed all the time. Whenever we’d take him somewhere, he had to have a cap on or he wouldn’t go. When he was in the special ed class at the high school, he decided he’d go to another class upstairs (advanced literature)and when the teacher asked his name he gave her a fictitous name. When the teacher said she’d never seen him in class before, he insisted he’d been there but was invisible!

Love it, Russ! And I STILL love this story the second time, too. Especially because my son loves garage doors and garage remotes and garage openers, too. When he saw the photo of your garage door, he asked, what kind of motor does it have? I’d love you to visit my blog so I can connect with you. And hear more of your stories.

I have been there and know how you feel. The great thing about having an autistic son is that they can make you feel great about the little things. Sometimes we get so caught up in our worlds that when someone that couldn’t care less about the normal things lets us know what is going on inside their heads it brings us a breath of fresh air.

It made perfect sense to me and I think I felt every emotion you did from just reading this… Im the same way in the frustration I feel when trying to do something that perhaps “normally” I would have never done just to see my little boy’s face light up. What a battle we face every day.

I have an autistic son – sometimes I do crazy things, because it is so important to be on the same page with him and work toward the same goal – that’s why we do it! But when things don’t go as planned – it’s part of the lesson – I love that your son took the broken glass well. The broken window that so infuriates the father is okay to the boy who is probably grateful for the fact that you took his project seriously in the first place. – a pretty normal, human response after all!

I am the mother of a 25 year old son who has Asperger’s. A couple of weeks ago, I told his therapist “No one, NO ONE who hasn’t raised a child with autism can ever REALLY understand what life is like for us or our son – only another parent with an autistic child”. WE GET IT ! Funny story from years ago…My husband drove to Tennessee with Jesse who was then about 12 years old. When they arrived he called home. I asked how his trip was. He replied: “How do you think it was…I listened to Jesse talk for 10 hours straight!”.